The Psychosomatic Researcher in the NIH's Big Chronic Fatigue Syndrome (ME/CFS) Study

[weyland]

BRIAN WALLIT: “One can pursue one’s health and try to get better, but to expect a cure is unlikely and the best thing that one can do is stop chasing cures and deal with the reality of one’s situation.”

Why is it acceptable to say this to an ME or FM patient, but not an HIV or cancer patient? Where do you draw the arbitrary distinction between where it's OK or not OK to say this?

OK, you could argue that we don't say this to HIV or cancer patients because medicine has an answer for those diseases and has no answer for ME/FM. First, that's not quite true, but more importantly there is a better thing you could say. For example, you could say "you have a serious and debilitating disease that medicine has very little understanding of. While I cannot provide a cure, I will do my best to support you in whatever way I can with the present level of knowledge."

Instead, Dr. Walitt is advocating for rewriting this narrative. He is quite clear in his beliefs as stated in the video of him and also in his slides. He believes we should go the opposite direction, that you should tell patients that "there is nothing physically wrong with you. What you are experiencing is normal a human experience. Medicine will not have any answers for you and I cannot help you in any way. Please figure out how to deal with this on your own."

This is the exact response that demoralizes and trivializes us as ME/FM patients. This is the response that Dr. Walitt suggests to practicing clinicians that he speaks to. He notes that this is the answer they love to hear because it verifies what they feel deep down inside, that these patients aren't sick and need to stop coming in. We will never overcome the stigma if this is considered OK.

 

[Nina]

http://thoughtsaboutme.com/2016/02/...e-perception-mecfs-as-normal-life-experience/

That CFIDS , ME is psychosomatic, that is all Wallit's got.

 

[gowwab]

I don't think they do! This is where his hypothesis falls down and where I believe his eyes will be opened by this study. He'll have to give up his hypothesis

Are you really willing to bet out collective futures on the fact that this guy might say he's been wrong all along? How often does that happen in real life? One would have to twist themselves into a pretzel trying to make this guys appointment as lead investigator to the biggest US study of our disease as a good thing.

Out of curiosity, what do you think of the controls they picked? They scare me too. Too many bad omens going on with no community oversight given.

At this point I'd rather have no big centralized study whose stated aim is to federalize treatment when nobody involved has a history of understanding the disease. It's such a crap shoot as to what they will recommend for treatment that it's not worth getting it wrong. I'd rather it be in the hands of people without an historical bias until more is known. That includes the US government. It's too hard to undo, look at the UK.

 

[Folk]

I came from my thread to this one from the link you posted @Cort so I don't know if it's the case but since we already have this thread about it, if you feel like deleting mine it's okay.

Now...
After reading it all I still stand firm with what I said in my thread. "Please curcify". That's the worst a doctor can do for us.
Even if I could get as optimist as you Cort, and tried to see the good intentions behind what Dr. Wallits said, still, there are ways and ways to say something. You can tell someone to go to hell and depending on the way and timing you do that this someone might even thank you.
But now... I gotta tell you, he's at the wrong place, wrong time with the wrong idea and the worst way to express it.
He's being disrespectful, ignorant, and stupid.

I'm pretty sure you'll win a Nobel for Hope (they'll have to invent a categorie) one day Cort, but let's place our hope at fertile soil. Right now we gotta fight this, we can't let this pass by and wait to see when will this doctor change his outdated and ridiculous beliefs.

 

[Simon]

The hypothesis seems pretty black and white.

It isn't, and I get the feeling you may not have really read my post here and on PR I linked to - the whole issue is whether or not Walitt believes this is pathogenic, and I'm afraid the paper doesn't say that.

We speculate that a variety of well-defined neuronal mechanisms enable peripheral cytokines to induce central cytokine changes, which trigger a subsequent cascade of neurological events as described below that lead to the experience of chemobrain​

the authors hypothesize that the administration of chemotherapy agents initiates a cascade of biological changes, with short-lived alterations in the cytokine milieu inducing persistent epigenetic alterations (Fig. 2). These epigenetic changes eventually lead to gene expression changes, altering metabolic activity and neuronal transmission that are responsible for generating the subjective experience of cognition.​

Note 'experience of' and no mention of pathogenic. Also, the contrast with neurologic injury in the paper, as I pointed out in my other posts.

Couple of quotes from the paper to help you out - think they make the authors' views very clear: normal not pathological

The essential questions underlying the validity of the hypotheses underlying the current chemobrain concept, that of direct causality and neuronal injury, are not answered by the scientific literature to date.

The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome. A somatoform view of chemobrain would consider it as an atypical yet predictable subjective experience that result from the normal functioning of the brain rather than from an injury. In this way, physiologic factors other than direct neurotoxicity from chemotherapeutic agents are the critical ones in establishing and maintaining chemobrain. Chemotherapy, or the psychological ramifications of cancer treatment, may simply be one of a variety of “triggers” that ultimately lead to dyscognition.​

​

The implications of this observation are that specific chemotherapeutic-related neurologic injury is not required to create the somatic experience of chemobrain.​

Any chance you could respond to this key point of pathogenic vs physiologic (normal)?

Few other specific replies, afraid I don't have the energy to make pretty

Does it really matter if he thinks the microglial or another form of immune activation is causing the problem? And really, if you're talking about immune activation in the brain - aren't you mostly saying the microglia?

He doesn't say immune activation in the brain (what others argue), merely cyotkines trigger a cascade leading to neuro changes, pointedly ignoring microglia and immune activation.

And he clearly doesn't invoke the microglia as you claimed - which others are saying is a pathogenic mechanism (evidence from this in rat models following immune stimulation), but he just makes hand-waving claims about epigenetics. And fails to explain why it's not pathogenic.

I also strongly disagree with your dismissal of epigenetics as if it's just another vogue topic. It took me one PubMed search to pretty quickly come up with this

Epigenetics is real and important. The vogue bit is ascribing anything you can't explain to epigenetics, a catch-all solution to ignorance. It might explain your problem, but evidence is needed.

Significance statement: Here we provide evidence of an epigenetic mechanism for information processing.

That's not in question. Epigenetics is involved in many, many processes. The authors could just as easiiy say "it's all down to gene expression". Well, yes. I dare say many specifc protein receptors and transmitters play key roles too. But what's the evidence the cytokine spike causes non-pathogenic, physiologic changes? Like I say, the microglia hypothesis at least has animal model evidence to support a pathogenic role. They are junking one hypothesis with limited evidence for a new one with no specifc evidence linking it to chemobrain or mecfs.

Increasing evidence suggests that epigenetic factors and mechanisms serve as important mediators of the pathogenic processes that lead to irrevocable neural injury and of countervailing homeostatic and regenerative responses. Epigenetics is, therefore, of considerable translational significance to the field of neuroprotection

Note how even this quote (not directly linked to chemobrain) is highlighting epigenetics role in a pathological process, not the normal one Walitt and co argue for.

 

[serotone9]

Btw, I thought someone named Nath was leading this study. Where exactly is this Walitt guy now coming from? This study is staring to feel like the twilight zone. Based on everything I'm reading in this thread, Walitt has got to go. He's a total nightmare.

 

[serotone9]

Why is it acceptable to say this to an ME or FM patient, but not an HIV or cancer patient? Where do you draw the arbitrary distinction between where it's OK or not OK to say this?

OK, you could argue that we don't say this to HIV or cancer patients because medicine has an answer for those diseases and has no answer for ME/FM. First, that's not quite true, but more importantly there is a better thing you could say. For example, you could say "you have a serious and debilitating disease that medicine has very little understanding of. While I cannot provide a cure, I will do my best to support you in whatever way I can with the present level of knowledge."

Instead, Dr. Walitt is advocating for rewriting this narrative. He is quite clear in his beliefs as stated in the video of him and also in his slides. He believes we should go the opposite direction, that you should tell patients that "there is nothing physically wrong with you. What you are experiencing is normal a human experience. Medicine will not have any answers for you and I cannot help you in any way. Please figure out how to deal with this on your own."

This is the exact response that demoralizes and trivializes us as ME/FM patients. This is the response that Dr. Walitt suggests to practicing clinicians that he speaks to. He notes that this is the answer they love to hear because it verifies what they feel deep down inside, that these patients aren't sick and need to stop coming in. We will never overcome the stigma if this is considered OK.

It's so telling that we don't even know what's causing ME/CFS yet, and he's already stating that there's "no cure." How can he possibly know that, unless his mind was already made up that it's totally psychogenic, meaning with no organic reasons? What a total crock this guy is.

I had really high hopes for this study, but it's clear what the NIH is trying to do. They're out to marginalize ME/CFS once and for all, to put the question to bed, so they can say they looked into it and there's nothing to be done. They're going to psychologize it so they can wipe it from the slate, have an "official answer" to give (go see a psychiatrist), and clear it out of their consciousness so they won't have to deal with it anymore. You can just see it coming from a mile away.

 

[Seven]

I was having so much hope that things were changing this is very discouraging and that is hard to accomplish on a person like me.

So is PEM required?? And why are they using this criteria??? We have to fight this 2 points. Use ICC or Canidian with PEM required.

 

[Cort]

Why is it acceptable to say this to an ME or FM patient, but not an HIV or cancer patient? Where do you draw the arbitrary distinction between where it's OK or not OK to say this?

OK, you could argue that we don't say this to HIV or cancer patients because medicine has an answer for those diseases and has no answer for ME/FM. First, that's not quite true, but more importantly there is a better thing you could say. For example, you could say "you have a serious and debilitating disease that medicine has very little understanding of. While I cannot provide a cure, I will do my best to support you in whatever way I can with the present level of knowledge."

Instead, Dr. Walitt is advocating for rewriting this narrative. He is quite clear in his beliefs as stated in the video of him and also in his slides. He believes we should go the opposite direction, that you should tell patients that "there is nothing physically wrong with you. What you are experiencing is normal a human experience. Medicine will not have any answers for you and I cannot help you in any way. Please figure out how to deal with this on your own."

This is the exact response that demoralizes and trivializes us as ME/FM patients. This is the response that Dr. Walitt suggests to practicing clinicians that he speaks to. He notes that this is the answer they love to hear because it verifies what they feel deep down inside, that these patients aren't sick and need to stop coming in. We will never overcome the stigma if this is considered OK.

Why would you assume that he's not saying medicine will not have any answers for you? Give him a little break here. He says FM patients cannot a expect a cure (can they?), that drug companies are over-hyping the results of their studies (aren't they?) and that you should feel free to explore other options (shouldn't you?).

I think that kind of honesty and openness is what you want in doctor. I think you're reading too much into that little interview. One of my goals was to broaden our understanding of Walitt past what amounted to a couple of short sound bites. (in your case it failed (lol))

Walitt runs Fibromyalgia clinic and has done dozens of studies on FM - including studies on the effectiveness of SSRI's, a Review of pharmacological therapies in fibromyalgia, Serotonin and noradrenaline reuptake inhibitors (SNRIs), Longitudinal patterns of analgesic and central acting drug use and associated effectiveness in fibromyalgia, Mortality in fibromyalgia: a study of 8,186 patients over thirty-five years, Amitriptyline in the treatment of fibromyalgia: a systematic review of its efficacy.

He's also done studies on gene expression, brain imaging, cytokines etc. He's produced a PDF for patients to help them understand how pain occurs (see attached)

Does that sound like someone who thinks people with FM aren't sick or should stop exploring their options?

 

[Cort]

I was having so much hope that things were changing this is very discouraging and that is hard to accomplish on a person like me.

So is PEM is required?? And why are they using this criteria??? We have to fight this 2 points. Use ICC or Canidian with PEM required.

Yes, you'll be happy to know that PEM is required and patients must meet the Canadian Consensus Criteria for ME/CFS and will come from an ME/CFS expert like Dr Klimas or Dr Peterson in order to be in the study.

(The Empirical definition is being used for the scales is provides.)

 

[Cort]

It's so telling that we don't even know what's causing ME/CFS yet, and he's already stating that there's "no cure." How can he possibly know that, unless his mind was already made up that it's totally psychogenic, meaning with no organic reasons? What a total crock this guy is.

I had really high hopes for this study, but it's clear what the NIH is trying to do. They're out to marginalize ME/CFS once and for all, to put the question to bed, so they can say they looked into it and there's nothing to be done. They're going to psychologize it so they can wipe it from the slate, have an "official answer" to give (go see a psychiatrist), and clear it out of their consciousness so they won't have to deal with it anymore. You can just see it coming from a mile away.

My guess Serotone is that you didn't read the blog because I cannot understand how you would come to that conclusion if you read. Walitt believes that immune processes in the brain are causing these diseases. He has done all sorts of research some of which explores the physiological causes of FM and other diseases.

• Comparing Genomic Profiles of Women With and Without Fibromyalgia.
• Gene expression profiles of fatigued fibromyalgia patients with different categories of pain and catastrophizing: a preliminary report.
• Mortality in fibromyalgia: a study of 8,186 patients over thirty-five years.
• Increased brain white matter axial diffusivity associated with fatigue, pain and hyperalgesia in Gulf War illness.\Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature.
• Lower brain-derived neurotrophic factor levels associated with worsening fatigue in prostate cancer patients during repeated stress from radiation therapy.
• Chemobrain: a critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy.

By the way, the other investigators in the intramural study are Ana Acevedo (physiatrist), Jeffrey Cohen (infectious disease & virology), Bart Drinkard (physical therapist), Luigi Ferrucci (geriatrician & epidemiologist), Penny Friedman, Fred Gill, David Goldstein (neurocardiology), Mark Hallett (neurology & motor control), Wendy Henderson (gastrointestinal immunology), Silvina Horovitz (neurology & motor control), Steve Jacobson (virologist), Eunhee Kim, Mary Lee (psychoneuroendocrinology), Tanya Lehky (electromyography), Jon Lyons (allergy), Eugene Major (virologist), Adriana Marques (Lyme disease, virology), Carine Maurer (neurology & motor control), Joshua Milner (T cells, allergy), Leorey Saligan (cancer fatigue), Stephen Sinclair (psychologist), Bryan Smith (neurology), Joseph Snow (neuropsychologist), Stacey Solin (nurse), Neal Young (immunology, bone marrow), Jay Chung (metabolism).

• I see one psychologist - probably to adminster questionnaires - and 22 other researchers. Instead of marginalizing ME/CFS they are actually kind of throwing the book at it physiologically speaking. I hope that relieves you!

 

[IrisRV]

I had really high hopes for this study, but it's clear what the NIH is trying to do. They're out to marginalize ME/CFS once and for all, to put the question to bed, so they can say they looked into it and there's nothing to be done. They're going to psychologize it so they can wipe it from the slate, have an "official answer" to give (go see a psychiatrist), and clear it out of their consciousness so they won't have to deal with it anymore. You can just see it coming from a mile away.

I don't believe we know that the NIH is trying to marginalize ME/CFS once and for all, nor do I believe we know what it is going to do in the future. We're not in the heads of the people involved nor are we clairvoyant, so we're not in the position to claim to know their intentions or what they will do in the future. There are other possible explanations than the most evil one to what NIH is doing. I suggest we give them a chance to clarify before we go after them with sticks.

However, I think we would be beyond foolish to ignore this possibility. We need to keep a very close eye on this situation and raise loud and clear objections to all steps in the direction of psychologizing ME/CFS. If we let the situation sneak up on us by the littles, by the time the problem is big it will be too late. See PACE. If there is such a plan in place, then our job is to trip it up at every step and shine light on it all so they can't hide it from the world.

I'm not ready to assign evil intentions to the NIH. Cluelessness exists everywhere, especially where ME/CFS is concerned. I'm also not ready to turn a blind eye to any shenanigans. I'm for watching carefully, questioning calmly and deliberately, and keeping our big stick close to hand.

 

[Seeksassy]

Without a baseline from before we became ill, how do you measure the decline? Also, while test results may indicate minor problems, how do they measure the effort it took to get the results? (Actually, I do realize that can be assessed with brain mri's and healthy controls, but was this done?) Things I used to be able to figure out easily and quickly now take considerable effort and time. And some days my cognitive function is better than others, so test days can by chance be on a good or bad day.

As to everything else in this blog, I am so confused!!! Usually I can read the blog, the pro and con comments, and come to a comfortable assessment. Sometimes I can review the research myself to help come to my own understanding. But this! I am so overwhelmed just by everything here that to look further seems impossible.

This is not meant as criticism to anyone here. Sincere thanks, Cort, for trying to help us figure out whether or not this fella is going to be help or hinder. And to the rest of you trying to do the same.

 

[Tiina]

... “One can pursue one’s health and try to get better, but to expect a cure is unlikely and the best thing that one can do is stop chasing cures and deal with the reality of one’s situation.”. Isn't that what we're all doing here, helping each other deal with the reality of our situations?

I very much disagree. I'm in a constant lookout for medication, and there are plenty of cures available at least with medium-severity CFS, most likely likewise with FM. They are not obvious cures because different pills help different people, but there's stuff that has helped me immensely, none of it psychological but coming from a jar. Without a CFS network (in my country) I'd be unaware of most of them.

 

[Cort]

It isn't, and I get the feeling you may not have really read my post here and on PR I linked to - the whole issue is whether or not Walitt believes this is pathogenic, and I'm afraid the paper doesn't say that.

We speculate that a variety of well-defined neuronal mechanisms enable peripheral cytokines to induce central cytokine changes, which trigger a subsequent cascade of neurological events as described below that lead to the experience of chemobrain
the authors hypothesize that the administration of chemotherapy agents initiates a cascade of biological changes, with short-lived alterations in the cytokine milieu inducing persistent epigenetic alterations (Fig. 2). These epigenetic changes eventually lead to gene expression changes, altering metabolic activity and neuronal transmission that are responsible for generating the subjective experience of cognition.​

Note 'experience of' and no mention of pathogenic. Also, the contrast with neurologic injury in the paper, as I pointed out in my other posts.

Couple of quotes from the paper to help you out - think they make the authors' views very clear: normal not pathological

The essential questions underlying the validity of the hypotheses underlying the current chemobrain concept, that of direct causality and neuronal injury, are not answered by the scientific literature to date.

The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome. A somatoform view of chemobrain would consider it as an atypical yet predictable subjective experience that result from the normal functioning of the brain rather than from an injury. In this way, physiologic factors other than direct neurotoxicity from chemotherapeutic agents are the critical ones in establishing and maintaining chemobrain. Chemotherapy, or the psychological ramifications of cancer treatment, may simply be one of a variety of “triggers” that ultimately lead to dyscognition.

The implications of this observation are that specific chemotherapeutic-related neurologic injury is not required to create the somatic experience of chemobrain.​

Any chance you could respond to this key point of pathogenic vs physiologic (normal)?

Few other specific replies, afraid I don't have the energy to make pretty
He doesn't say immune activation in the brain (what others argue), merely cyotkines trigger a cascade leading to neuro changes, pointedly ignoring microglia and immune activation.

And he clearly doesn't invoke the microglia as you claimed - which others are saying is a pathogenic mechanism (evidence from this in rat models following immune stimulation), but he just makes hand-waving claims about epigenetics. And fails to explain why it's not pathogenic.

Epigenetics is real and important. The vogue bit is ascribing anything you can't explain to epigenetics, a catch-all solution to ignorance. It might explain your problem, but evidence is needed.

That's not in question. Epigenetics is involved in many, many processes. The authors could just as easiiy say "it's all down to gene expression". Well, yes. I dare say many specifc protein receptors and transmitters play key roles too. But what's the evidence the cytokine spike causes non-pathogenic, physiologic changes? Like I say, the microglia hypothesis at least has animal model evidence to support a pathogenic role. They are junking one hypothesis with limited evidence for a new one with no specifc evidence linking it to chemobrain or mecfs.

Note how even this quote (not directly linked to chemobrain) is highlighting epigenetics role in a pathological process, not the normal one Walitt and co argue for.

The main issue for me is how whether Walitt believes a pathogenic or "physiologic" process is going on or whatever he calls the process that's going on. I don't care WHAT he calls it - my priority is that he find it.

So he doesn't believe that chemotherapy drugs destroy the neurons....Instead he believes that "neu-ronal and other cells release cytokines, which then act to alter neuronal plasticity". If that's what a physiologic process (a deranged immune system but no actual damage to neurons) vs a pathogenic process (damaged neurons) that's fine with me. So long as he's looking for physiologically I really don't care. The point is that that he's looking.

When someone proposes that you whack patients with a physiological stressor and then examine their biology in order to figure out the mechanisms that are causing their illness - I'm interested in that. That's the key for me. What he calls those processes is almost meaningless to me. He could be wrong about the cytokines - I hope he's not because the microglial hypothesis would go down the tubes - but the point is that he's looking in the right place.

With regard to the microglia Walitt does not "ignore the microglia"; his theory is based on cytokines in the brain altering brain functioning; as he states in the paper that de facto means microglia so while he only mentions them briefly microglial activation is clearly key part of his hypothesis

Cytokines in the brain are mainly derived by microglia, with smaller contributions from astrocytes, oligodendrocytes, and neurons, rather than peripheral sources [66].

When you saying that immune activation is different from cytokines changing the way the brain functions - or the pathogenic with physiological question...I think you're trying really hard to find holes in Walitt's hypothesis.

Again, whatever the differences in interpretation, the point is that Walitt is interested in and believes that immune changes in the brain cause FM and ME/CFS. His hypothesis could be wrong, his idea that the immune changes cause altered perception - which I suppose means symptoms like fatigue and pain where no injury in the body exists - could be wrong.

Walitt doesn't have to be right or wrong to be suitable to be part of the NIH study - his hypothesis could be wrong - who knows how all this will turn out - he simply has to have the right direction. An investigator who believes that immune changes in the brain may be causing these diseases - and are looking for mechanisms how that might happen - those are the kinds of investigators I want involved with the NIH study.

 

[Cort]

I very much disagree. I'm in a constant lookout for medication, and there are plenty of cures available at least with medium-severity CFS, most likely likewise with FM. They are not obvious cures because different pills help different people, but there's stuff that has helped me immensely, none of it psychological but coming from a jar. Without a CFS network (in my country) I'd be unaware of most of them.

When he says "cure" I think he means totally cured - bang the disease is gone. His field is fibromyalgia, by the way, not ME/CFS. My guess is that you're helped but not cured (???)

To whomever said he was a psychologist - he's a rheumatologist. I thought I would clear that up.

 

[IrisRV]

ETA: Again, I am profoundly sorry. I was completely and utterly wrong about Dr Walitt's profession. He is a rheumatologist with medical and research training. Much of what I wrote below is totally wrong. I have put a strikeout through my incorrent statemenst, but left them in to avoid confusion with responses etc. Believe me, I'd like to take it down and hide it under the carpet to reduce my embarrassment, but I think it's better this way.

I see one psychologist - probably to adminster questionnaires - and 22 other researchers. Instead of marginalizing ME/CFS they are actually kind of throwing the book at it physiologically speaking. Ihope that relieves you.

I agree with you that there are plenty of sound biomedical researchers on the team. There's plenty of room for excellent biomedical research into ME/CFS. It's encouraging that the cohort looks good (although I have some misgivings about the duration of illness restrictions). I'm excited about the possibilities.

I just don't like that they put a psychologist researcher with some, let's say questionable, views on chronic illness in the position of lead clinical investigator. This is not a psychological, philosophical, spiritual, or religious exercise. It's hard, objective science. Let's have a hard objective scientist in charge.

Wallit has indeed done quite a bit of research into physiological factors (I don't agree that he's treated them as causal). The problem, imo, lies in how he interprets the results of the physiological testing. SW has done research into biomedical factors in cfsme also, and conveniently found that either the biomedical connections don't exist, or that they are based in psychological causes. So doing research that sounds good in the title, doesn't mean it's not fraught with psychological/spiritual interpretation.

Psychologists are not trained to administer or interpret biomedical evidence. It's not their field. The are not trained biology researchers. They don't have the scientific background or laboratory training. I wouldn't put a lawyer, however kindly and intelligent she may be, in the position of lead clinical investigator either. I wouldn't put a physicist in charge of psychological research.

Wallit may be a great guy. He may be brilliant and highly knowledgeable in his own field. He may take in old ladies, orphans, and stray animals. Great, we like the guy. Give him a medal. Just don't put him in charge of biomedical investigations. If he needs to be the leader of something, put him in charge of the psychological research. There, he's qualified.

 

[Cort]

I agree with you that there are plenty of sound biomedical researchers on the team. There's plenty of room for excellent biomedical research into ME/CFS. It's encouraging that the cohort looks good (although I have some misgivings about the duration of illness restrictions). I'm excited about the possibilities.

I just don't like that they put a psychologist with some, let's say questionable, views on chronic illness in the position of lead clinical investigator. This is not a psychological, philosophical, spiritual, or religious exercise. It's hard, objective science. Let's have a hard objective scientist in charge.

Wallit has indeed done quite a bit of research into physiological factors (I don't agree that he's treated them as causal). The problem, imo, lies in how he interprets the results of the physiological testing. SW has done research into biomedical factors in cfsme also, and conveniently found that either the biomedical connections don't exist, or that they are based in psychological causes. So doing research that sounds good in the title, doesn't mean it's not fraught with psychological/spiritual interpretation.

Psychologists are not trained to administer or interpret biomedical evidence. It's not their field. The are not trained biology researchers. They don't have the scientific background or laboratory training. I wouldn't put a lawyer, however kindly and intelligent she may be, in the position of lead clinical investigator either. I wouldn't put a physicist in charge of psychological research.

Wallit may be a great guy. He may be brilliant and highly knowledgeable in his own field. He may take in old ladies, orphans, and stray animals. Great, we like the guy. Give him a medal. Just don't put him in charge of biomedical investigations. If he needs to be the leader of something, put him in charge of the psychological research. There, he's qualified.

Where did this idea come from that Walitt is a psychologist? He's not a psychologist - he's a rheumatologist. (and yes he's done quite a bit of "hard, objective science"). Here's a bunch of citations proving that so we can get it out of the general consciousness:
Dr. Brian T Walitt MD, MPH - Internist, Rheumatologist - 13 years of experience - http://www.vitals.com/doctors/Dr_Brian_Walitt.html#ixzz416KzTyyN
Dr. Brian Walitt is a rheumatologist in Washington, DC, . He treats disorders affecting the joints, muscles and bones (and may also involve other organ systems). http://brianwalitt-do.md.com/

Brian Walitt is a Rheumatologist at Washington Hospital Center. He is actively involved in both clinical and investigative rheumatology. His research foci include chronic pain disorders and the epidemiology of rheumatic disease. He is board certified in internal medicine and rheumatology. -http://www.cfsnova.com/sp-Walitt.html#about

As Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations, Dr. Walitt will provide his medical and scientific expertise to the development and oversight of intramural clinical protocols. He will help identify patient populations for pain studies, as well as educate NCCIH trainees about various chronic pain syndromes. Dr. Walitt has a dual role as a medical officer at the National Institute of Nursing Research.

Dr. Walitt has been awarded multiple honors at the local and national level in recognition of his research in the areas of pain syndromes and general rheumatology. He was most recently awarded the American College of Rheumatology Investigator Award for his study entitled “The effects of exercise therapy on brain function in fibromyalgia.” Dr. Walitt is an associate professor of Medicine at Georgetown University Medical Center and the research director and associate director of the Division of Rheumatology at Washington Hospital Center. He has active research collaborations in the field with research labs at Georgetown, the National Institutes of Health, and the University of North Carolina and will be continuing research efforts with investigators both nationally and locally.

https://www.arthritis-research.org/research/brian-walitt-md-mph

Brian Walitt MD MPH is an assistant professor of medicine at Georgetown University. His research interest is fibromyalgia and associated autoperceptual disorders where he is both published and funded.

Dr. Walitt has received several intramural and pharmaceutical research grants in the areas of fibromyalgia. He was selected as a Centocor Health Outcomes in Rheumatic Disease fellow. He was awarded an American College of Rheumatology Research and Education Foundation Clinical Investigator Fellowship Award for his work with postmenopausal hormone therapy in rheumatic disease. He is currently a co-investigator in the Women’s Health Initiative and an active investigator for the Cochrane review. He is a member of the OMERACT fibromyalgia committee. He has performed several investigator-initiated studies in fibromyalgia using neuroimaging techniques and neuropsychological instruments. He is also actively involved with pharmaceutical trials for the treatment of fibromyalgia

 

[Bethie]

My biggest problem with this guy is that, where medical tests are unable to replicate patients' experience of their illness (for instance, in cognitive testing), he assumes that the gap is entirely due to the patients' experience of their illness being unreal. And he is too willing to let that be the point on which his approach to the disease rests. For too many aspects of this disease, we have found twenty years later that patients were right all along about what was going on in their bodies, and that medicine just didn't have the knowhow or technology (or correct subtyping) to look in the right places for the culprit. For instance, patients do actually undergo a decrease in aerobic capacity on the second day of an exercise test, IF you bother to listen to the patients and test on the second day. With regards to cognitive testing, I believe that they'll find their assumptions of baseline cognitive ability are way off, and that they are testing a group of people who had above average cognitive skills before getting sick. We need researchers who question the status quo of medical research, not researchers who start with the assumption that the patient is an unreliable witness to their own illness.

 

[Seeksassy]

I very much disagree. I'm in a constant lookout for medication, and there are plenty of cures available at least with medium-severity CFS, most likely likewise with FM. They are not obvious cures because different pills help different people, but there's stuff that has helped me immensely, none of it psychological but coming from a jar. Without a CFS network (in my country) I'd be unaware of most of them.

I've been told by docs that you can recover from CFS but not FM.